Seminar Wednesday 1/21/09 Manhattan Beach, CA

[mmglobal]

This was in the LA Times over the weekend. These are always intersting, but they are really sales events.

I'll be going... I want to presonally thank William Dillin... he was the first doctor to make me understand the randomness of failed fusion... his second opinion a week before my 2-level 360 fusion (scheduled August 2000), prompted me to cancel the fusion and seek other options.

He had told me that I stood a 50% chance of being sorry I did the surgery. I said, "That's BS! I'm young, I'm fit, I'm motivated, the rest of my spine is in good shape. The numbers you quote are across the board including HMO hacks who do 10 fusions a year, the same way they learned them decades ago. I'm going to a world class spine surgeon with great experience, new technology, etc.... All this works in my favor, right?"

He said something like, "yes... that all works in your favor, but it's still 50%!" He went on to explain the way fusions fail and how things like lack of fusion and growth of scar tissue are not predictable and don't just plague the poor cases. He explained how one person can grow massive amounts of scar tissue and never know it's there, while others can grow very small amounts and have it ruin thier lives. His was the best dose of reality right when I needed it. I credit him with saving me.

It's quite fitting that his topic is surgery decisions. See you Wednesday if you can make it!

Mark



Woops... edit to change location to Manhattan Beach

[Justin]

Let us know how things go!

[Tim]

Hi
That 50% figure is pretty scary for anyone who's only option is fusion.
I've never seen published figures as poor as that - If 50% is correct then were down to the flip of a coin. Most of the studies I've read seem to give long term outcomes (particularly for single level surgery) as pretty similar to ADR.
ADR may have the edge regarding adjacent level degeneration but I find it hard to accept that 50% of all fusion patients live to regret there decision.
ADR definitely is an important tool but it is not a panacea. Fusion techniques are being improved all the time. All back surgery is a crapshoot but if 50% is a true figure then that's pretty depressing for all of us with no other options..
Tim

[mmglobal]

I agree that 50% is not realistic... he was just trying to convey that it's not a slam dunk and being a good candidate does not, anywhere near, guarantee success.

[Maria]

That slammed dunked it to me via a 30 minute phone conversation before he ate his dinner at home advising me on poor outcomes with 3 level global fusions.

I had called around various spine surgeon offices back in 2001 when my OSS recommended a 3 level global fusion and Dr.Dillin was on his list of 3 surgeons for 2nd surgical opinion. Dr. Dillin's secretary took my information and I actually didn't expect a call back because it was probably close to 7p.m. when he called me back one evening.

Dr. Dillin very kindly took the time to talk to me and really just impressed upon me that outcomes with this degree of spine surgery weren't all that favorable tho he would be willing to see me in the office and would want to have the discogram at the hospital he was then affiliated with.

Ok ~ I am so glad this busy surgeon took the time to speak with me. I have since then always been thankful everytime I hear his name and that I made the decision not to have that magnitude of surgery 8 years ago. I've had some very decent pain relief with ESI and low dose pain meds in last 8 years and several years that were just awesome in terms of relief. Mark, if you get a chance, please thank him for me!

[Kathy]

that's depressing... especially for those of us that can't get insurance approval for adr and can't afford to pay for it.

[mmglobal]

Bumping up to top for our So. Cal spineys....

I just called and many seats available.

[mmglobal]

Very interesting seminar. First 1/2 was by Dr. Vernon Williams talking about COMPREHENSIVE pain management and diagnosis provided by his full service facility at Kerlan-Jobe Orthopaedics. I was very impressed and believe that he really has a great approach.

There were some great discussions... definition of pain includes both sensory and emotional component and something I'm understanding more and more, that chronic pain can become a disease unto itself. He had many very informative slides discussing nociceptive vx. neuropathic pain.

I asked how trigger-point injections can work for referred pain and he really nailed the answer and made me understand how even though the source of the referred pain may be elsewhere, our response to the referred pain sets up local problems that contribute to a complex pain syndrome. During his explanation he pulled his elbow into his waist as an example guarding mechanism to explain how the guarding itself can cause pain. His motion was so much like mine... everyone laughed when I said, "are you making fun of me?" My shoulder hurts like hell as I write this and I wish K-J was on my insurance... I'd be camped out in his office right now.

Best line of the night was when he talked about "evidence based medicine" being used by insurance companies to deny reasonable coverage. He said, "Evidence Based Medicine say that we must use the best available evidence. It does not say that we only can use double-blind, randomized, placebo controlled..... studies."

Dr. Williams also had a great section on how Thoracic Outlet Syndrome mimics cervical spine problems. His was the first presentaion I've seen on full-agonist vs. partial-agonist opoids and his use of Buprenorphine instead of traditional opioids. I will not preted to understand this or to be able to explain it. I look forward to learning more .

Nicely done Dr. Williams.

It was great to see Bill Dillin... I had only seen him once as a patient > 8 years ago. He looks younger now? His presentation was about making surgical decision. He presented an overview of treatment options and a much more 'real world' outcomes than what I'm used to seeing surgeons present. His bad review of fusions for back pain kept me from doing a 2-level 360 fusion in 2000. There is NO QUESTION about it... this man does not do surgery because it's lucrative. He will only do surgery if he has a very high expectation of success.

While I appreciate his candor and his caring demeanor and think that EVERYONE considering spine surgery should hear what he has to say, I do not agree with so much of what he has to say. He seems to believe that lumbar ADR via anterior procedures is an absolute non-starter because of potential revision issues. If his recommendation is no fusion, adr or other surgery (for back pain) beyond the low invasive high success surgeries, I think that he paint the entire patient community with too broad a brush and does not understand what people that are in the condition I was in before my ADR surgery face. Even if he's right that it's only 60% successful, the patient should be able to take that risk. Actually... his position is completely reasonable in selecting the surgeries that he wants to do based on what he believes is an acceptable success rate. You have the choice to go elsewhere. There... so I change opinions in mid-sentence.

I was pleased to be able thank him personally for the great help he was to me in 2000. I also thanked him for Maria, as she told me about him calling her before she had even seen him. He's a great guy and it's a pleasure to deal with a doctor who's motivations are so clear.

Thanks Dr. Dillin!

[Justin]

Mark,

It sounds like it was an interesting seminar. When I stress the point about nociceptive and neuropathic pain, people look at me like I have two heads. There is a fundamental distinction here, and how a patient should be worked up and subsequently treated.

The evidence-based medicine quote was interesting. However, I have to say thank God that devices/drugs/etc undergo extensive testing that involves double-blind, randomized, placebo-controlled studies. If we didn't employ rigorous testing in regard to studies, many more people would end up with life-threatening complications and we would have substantially more deaths. Well thought out studies that are tightly controlled is only a good thing for the patient community--it's a slippery slope when you start compromising your standards, especially with that that directly affects human life.

Thanks for the report!

[mmglobal]

I agree that testing is good. Yes, the FDA sometimes saves us from overzealous, too early adoption of unproven technology. In other extremes, our process keeps us from having access to proven technology that is just better. For example, the uncoated version of the Charite' was approved in 2004. When the trial was submitted, the uncoated version was in use. By 2004, the Hydroxyapitite coating was standard on so many other orthopedic devices. It was 17 months before we stopped using the inferior version.

Last year, I attended the California Technology Assessment Forum, a panel that meets twice a year to provide Blue Cross/Blue Shield political cover for denying coverage. One of the presenting surgeons told me about a cancer treatment that was pending approval. Over the years, technology has advanced that allows us to direct targeted energy more and more accurately. This is hugely important because it allows the surgeons to more accurately destroy cancerous tissue while doing less damage to surrounding tissue. He told me that the new system had been accepted as superior and had excellent data behind it. About 40% of the providers had adopted it as standard even though the insurance companies were not paying for it. The equipment is expensive and it's difficult for providers to gain access to the technology without adequate reimbursement.

Many of the providers provided treatment at a loss. May patient self pay for the superior procedure. His amazing point was that generating class 1 data in this case will NEVER happen. In his opinion, it would be malpractice to enroll people into a study and allow them the get inferior treatment for the purpose of providing class 1 data. Who would enroll if informed consent was appropriately done? For the insurers to hang their hat on the lack of class 1 data and continue to deny reimbursement for the treatment that cancer patients need is a horrible abuse of the system.

I don't know how we got to this place... I understand the harsh realities of providing services after the 70's and 80's when medical costs spiraled out of control. The pendulum has swung the other way and all I know is that I can hardly afford insurance and now have to compromise care because it's too costly.

Sorry for the rant.

Mark

[mmglobal]

If anyone has seen any not-too-technical literature on nociceptive and neuropathic pain, or on the new medications that more accurately target different receptors... please post.

Mark

[mmglobal]

Another interesting topic was bioavailability of Neurontin vs. Lyrica. (You can take a bunch, but is it all available to your system or do you just elimiate it without using it?) I don't remember the numbers but they were very dramatic and with Neurontin, the bioavailability decreased substantially in the high doses.

[phylly]

I would love to know more about that since I am on high doses of nuerontin.
Phylly

[trkdoc714]

I was given the option of Neurontin and Lyrica but opted for Oxycodone. It has addictive qualities but I schedule myself for 3 or 4 days with no medication at all every few weeks. Although I'm prescribed 20 mg daily, I try to limit myself to 5 or 10 mg.

I'm not being judgemental. My family has a history of abuse, both alcohol and narcotic. So I'm very frugal with medication.

[Maria]

edited as necessary